Originally, this blog was about a mother's experience of living with the disabling diagnosis of schizophrenia - and of trying to keep it secret. But now I have decided to open up this blog.
Read all about it here and in my book, 'Surviving Schizophrenia: A Memoir', by Louise Gillett. As a Paperback or ebook.

Saturday, 25 August 2012

I am about to share one of the biggest things that has happened in my life this year! I have kept quiet about it for a bit, in case it didn't go ahead, but it is all looking good at the moment. I have been invited to speak at a programme of events at Newcastle University this Autumn. It is all to do with an art exhibition called 'Reassembling the Self'.

Newcastle Uni have an artist in residence, Susan Aldworth, who, with several other artists, has done some work around schizophrenia - and the University is now hosting some events around the exhibition. Including a talk by Henry and Patrick Cockburn (authors of 'Henry's Demons') - and one by moi!

I will tell you more about dates, etc, as and when I know exactly what is happening. But I just thought I'd share the news now - and unveil a poem I wrote about it. I am not 100% happy with the poem. I have been working on it for a couple of months, ever since Kate Hudson, public engagement officer for Newcastle Uni (who originally contacted me via Twitter) told me that they were hoping to create a 'festival-type buzz' around events - which should go some way towards normalizing the term 'schizophrenia' and help to reduce the stigma around it.

I got completely stuck with the poem, but then had a 'Eureka' moment while driving the the other day...And because it has been in the pipeline for so long, I am now over-impatient to get it out there..anyway, here's the poem, in its not-quite-finished form.

Celebration – a Festival of Schizophrenia

A festival, when I was young, meant drugs and mud

Wine to numb the mind, and love to stir the blood

Outlandishness or individuality, fun tinged with fear

Singing, dancing, portaloos and paranoia; campfires, beer

But then the balance tipped, the fear outweighed the fun

And madness loomed, and peace took far too long to follow on

For 'Schizophrenia' sapped my spirit, froze my brain

I switched my Self to 'Off', and thought I'd never laugh or
love again

Wednesday, 22 August 2012

Wow, there is suddenly so much happening in the world of mental health. Last Saturday morning, a friend called to tell me I should listen to Radio 4 as there was a programme on about mental health that would be really relevant for me. I did listen - hence my last post on here.

Today, Paul (my husband, for those of you who don't know) emailed me from work with a link to an article about post-pueral psychosis on the BBC website. Then this evening a Facebook friend linked me to a Radio 4 programme on the same subject. I haven't listened to that yet - because I got distracted by a link on Twitter to a Newsnight programme - which uses the same material as the BBC article. I wouldn't be surprised if the Radio 4 programme isn't about the same film (sorry about the double negative, I always try to write clearly, but it's late and I'm tired.

Anyway, I just went a bit mad on Twitter, replying to all the people who had commented on the Newsnight programme and trying to get them to look at my book. I was just so excited that several other women who have had post-partum psychosis were publicly speaking about it - it is such a huge and important step forward for mental health!

It made me sad that the woman who confided to mental health professionals on a Monday that for the last several weeks she had been suffering intrusive thoughts about harming her baby and young son found herself in a locked ward by Friday, without her new baby. She was given ECT - which she said was very effective in her case. But OMG - will this help other sufferers come forward?

Shouldn't the mental health professionals have reassured her that she'd had these thoughts for months yet not harmed her sons and that therefore she was unlikely to do so? Shouldn't they have congratulated her for having the courage to tell them her deepest thoughts and fears, and treated her gently and kindly and with compassion?

Then again, she seemed happy with the treatment she received, and the outcome was an awful lot better than for one of the other women featured on the programme/in the article, who presumably did not confide in mental health professionals and who subsequently killed herself and her baby. Perhaps I should just thank God for the mental health system instead of berating it for the standard of treatment it provides.

After all, I am still alive, I have my baby (she's rather grown-up now actually) and her three siblings - I have my husband and my home and my friends and a multitude of other blessings to count. Maybe I shouldn't complain about the label of schizophrenia that I was given in exchange for the help I received.

But no - I still think that there is much room for improvement in the mental health services. I hope I can help them in their efforts - work with them, help them to see things from the other side, help others to continue to understand the issues.

It is such a big subject - but the media coverage is really going to make a difference. Thank you, BBC!

Sunday, 19 August 2012

The thing I found most interesting was when the presenter and guests spoke about the usefulness of narrative in healing. It is so true - by writing one's story, ordering it and making it as clear and comprehensible as possible, you come to understand it all so much better. And what is more, you achieve ownership of it. When the first copy of my paperback arrived from CreateSpace, for me to check and edit if necessary, it came printed diagnonally across the back page with a single word in huge black capital letters 'PROOF'.

I knew, of course this meant that it was a proof copy, not for resale, but to me it meant more - it symbolised the fact that seeing my book in print was real, actual proof. Proof of what I had been through, proof that I had rallied enough to be able to deal with it - proof that I had made a book out of it. Proof that I was able to tell my story and that other people would be able to read it and understand. PROOF.

Since I have written and published my story I have got so much better. I have realised that I am not fatally flawed - that there were valid reasons for my breakdown, that I have been well for many years and that there is no reason why I should not remain well. I have realised that I am not, in fact, schizophrenic. I am merely human. (One of the speakers on the programme I linked to above says that when speaking in public about what is usually termed mental illness he refers to it as human frailty. I certainly had my share of that - but in some ways I was very strong. I had no support at all from the age of sixteen - financial or emotional - and yet I was always pushing myself onto do things that I found really hard and that anyone else would have had the sense not to attempt - eventually I cracked).

My eldest daughter is twelve years old now, and she is a really sensible and strong character. But I cannot conceive, how she, or any other young person would have coped in my shoes. By the time I was twelve years old the curcumstances of my childhood were almost inconceivably hard. Anybody in that position would have cracked. (There were some things I didn't even put in the book, because I didn't want to point the finger or seem bitter and twisted - but in some ways it was all even worse than I described. In other ways I was fortunate - even during the years when I was 'mentally frail' I had several kind and caring boyfriends for example, and I made some friends during college and university years who I am still close to today. I also had the kind of freedom from my earliest teenaged years that a lot of teenagers would have been really pleased about- although it is nowhere near such a good thing as it might seem from the other side).

Anyway, enough about me. I have recovered, and I am extremely grateful for that fact. And what I have been trying to do now is to help others to find a way through difficult times - mostly by writing, because that is after all my special subject. I held a writing group earlier this year, not for profit but just to learn how to teach, and I really enjoyed it. In a few weeks' time I am scheduled to run another group, mainly for people with mental health problems - a creative writing group but with therapeutic undertones (on behalf of the peer-led charity that I work for part-time). And later this year I am due to co-lead a 'Recovery Narrative' course, which hopefully will continue the good work - help people to help themselves by ordering their thoughts, clarifying their stories and just enjoy setting the record straight.

Talking about setting the record straight, I have asked to see my medical records for the third time, and finally I am getting close. The first two occasions I wrote to ask to see them, I did not even receive a reply. This time I did, but was told I would have to pay £50 for copies of the electronic and written notes, or ten pounds just for the electronic ones. I guess this sum of money puts a lot of people off - but I am blundering on, have now received an invoice for the amount and once I have paid it I should hopefully get the paperwork through.

I have already had the electronic notes and they actually make fairly innocuous reading - there is really not much to them at all, especially now that I am so used to terms like psychosis and schizophrenia. In fact, I was a little touched by the kindness that somehow seemed implicit in the very sparse notes - reading them actually felt like somebody had been making an attempt to care for me, something that unfortunately did not come across much at all during the actual periods of supposed care in hospital.

The recent conversation I had with the psychiatrist is recorded - he writes that, 'There is a likelihood that she could be in remission, but that the initial diagnosis could have been something different'.

Anyway, whatever. I honestly don't think the label thing matters anymore. I don't even think that the mental health problems I suffered have any relevance to my current life - I was so different at that time, everything was so different back then. I just want to understand it all as fully as I can - the treatment, the written notes, the angle the mental health professionals were or are coming from.

Then I can get on and finish my 'Recovery book' to the best of my ability and after that I can start (or complete) another book. Because one thing I have learnt for sure from my journey so far is that as long as I continue to write, life will always be good.

Sunday, 12 August 2012

My family and I are lucky enough to live near the beach. I use the beach a lot in the winter to walk the dog, but since I have had young children I have not spent all that much time there in the summer. It is hard work with young kids at the beach in the summer - you have to feed them, water them, and most importantly, make sure that they don't burn in the sun.

But last year, a couple of friends asked me to share a beach hut with them, and I don't think we will ever look back. Last summer wasn't easy for me - I had both my bunions operated on, and couldn't drive, or even walk much. But my friends all helped - I got lifts down to the hut every time I wanted to go, and once I was there I put my feet up while everyone played and the other adults looked after all the kids together.

This year is so much easier. I can get to the beach under my own steam, and Toddler is so much easier now that he is growing older. In fact, I have to admit that he is no longer a toddler - he will start full-time school in September. He is getting quite independent now - gets himself dressed (when he's in the mood), no longer needs a step to get into the bath or onto the toilet. And at the beach he just plays in the sand, or in the water if he can persuade an adult to take him in.

I have Toddler to thank for my own recent immersion into the British sea - I had not done any more than paddle since I was a child. But the other day his older brother and sisters were larking around in the water and he was so desperate to join them that I had to lift him up and carry him in with me. It was so cold - but so invigorating, and you do warm up eventually...

Yesterday I bought myself a wetsuit (only about £27 for a full-length one from Sainsbury's) and I was amazed at the difference it made. I had thought that they didn't really work - I have bought them for the kids under protest, thinking they only wanted them because their friends had them. But no. Although the sea is still a little cold initially (ok, a lot) you soon warm up, and it is nowhere near as much of a shock to the system.

And once in, I had such fun! My eldest was looking at me in amazement as I jumped the waves and shrieked and yelled with joy. 'You're behaving like a child, Mummy,' she said. I was. And it felt good!

So that's it for the summer. Whatever the weather for the next few weeks, I shall be found at the beach with my family, at the hut and in the sea, behaving like a child and feeling like one too. This is the life for me!

Tuesday, 7 August 2012

As regular readers will know, I have been 'gluten free' for a while now - since before Christmas. I was advised to give up gluten by a nutritionist friend, and was delighted to find that my IBS symptoms all but disappeared, and my nerves also calmed considerably.

I recently went on a two week holiday with my family, and was concerned about how I would manage not to eat foods containing wheat while I was away.

I just said 'No,' to the in-flight snack, which was a sandwich, and felt quite pleased about it when the rest of the family (including Paul, who usually eats anything without complaint - one of the reasons I married him was because he enjoyed my corned beef hash) said it was really not nice.

We arrived in France late on Saturday night, and the next day we had been invited to eat lunch and dinner with friends because the supermarkets in France are not open on a Sunday. (We have friends in the South of France, and we had booked an apartment very near them).

Anyway, I fell at that hurdle, because I really did not want to be rude and refuse to try the delicious home-cooked quiche my friend had made (she serves up haute cuisine food all day every day to her family. How?) So I ate gluten, and it was fine. I can't remember what we had for dinner, but I know it contained wheat again, and by the next day I was scoffing croissants for breakfast and baguettes for lunch - all with no ill effects. I continued like that for two weeks - just eating the same things as the rest of the family, and it felt really liberating after all this time.

I know IBS often gets better on holiday anyway, but I was still relieved to be able to eat freely and not to have stomach problems. I was worried though about the effects on my nerves of eating gluten again.

I only found out after giving up gluten that a gluten-free diet helps to reduce anxiety, and I was also having CBT at that time, so I was unsure exactly what effect was caused by what, but I was just really pleased not to be nervous for the first time in my life. And so the not eating gluten became a bit of an obsession - I stuck to it religiously. I think I had become a bit neurotic about it.

I hate the thought of being dependent on anything - even on eating in a certain way - so I was glad I had finally tested it and got over my fear of doing so. I was not sure what I would do when I was back in England - eat gluten or not? - and my tendency has been to not, but I have been more flexible and one evening I had pasta and garlic bread and again was absolutely fine - no stomach ache, no symptoms at all. As for my nerves, they seem settled, and I hope that the CBT strategies I have learned will keep me mentally well.

I watched Horizon last night - the presenter Michael Mosely advocated an intermittent dieting strategy to improve health, longevity and brain function. It was an interesting programme, and I think I may try his methods out for myself. I think perhaps I have some inate need to exert control over my life - maybe because I had so little when I was young (cod psychology special). Lucky really that I never succumbed to an eating disorder.

I was in a local supermarket today - I had just popped in to buy some ice-creams for the kids on our way to the beach (yes, I am a cheapskate, but doing it this way keeps the kids and me happy). Anyway, there was a family there causing a commotion at the checkout - shouting at each other, throwing the food at each other ('You pack it! - 'No, you pack it!'). It was a bit of a pantomine, and I was glad I had left the kids outside in the car so they couldn't witness it.

They really were quite over the top - they had a couple of young boys with them, and at one point they were shouting about how they had to potty train one of the boys because he was starting school in September (they were buying potties amoungst lots of other stuff). I felt sorry for these children -whose heads were completely shaven like mini-thugs in training - and I also felt bad about myself for feeling so judgemental about the family.

I am going to give up my subscription to The Times at the end of this month. I spend about an hour a day reading the paper, and I think it could be time better spent writing, or reading novels which would help my writing. At the moment I usually only manage to read one book a month, and only because I have to read it for my book group. Also, I think perhaps reading The Times is contributing to my lack of compassion and understanding - I should be reading 'The Guardian'.

I will miss it - one of my favourite moments of the day is hearing the newspaper plop through the letterbox each morning - but I am going to give it a break for a bit - maybe just get the Sunday Times, read the other papers online, see how I go.

We are sharing a beach hut with friends for a couple of weeks this summer - I love it! The weather has not been great so far this week, but in a way that is good - the kids play anyway, and they won't get overheated or sunburned. I have been surprised at how well they occupy themselves on the beach - I spend swathes of time reading, drinking tea and chatting with my friends. There is very little cleaaring up or washing up to do at the beach, and the children are mostly living in beach wear so I don't have too much washing at home. I feel like we are still on holiday. (I suppose we are - it is school holidays, of course).

The nice thing is that the dog can come with us, as the hut happens to be in a spot where dogs are allowed on the beach. I don't bring her for the whole day, just for the morning or the afternoon, but it's good to have her around.

She must know I am writing about her - she has just snuggled up to me on the sofa and is now resting her head on my laptop. Sweet little thing. We all missed the dog when we were in France - but I was very lucky that a friend of mine - a lovely lady - looked after her. She even let the dog sleep on her bed - something we draw the line at - and has said that she will have her again anytime we go on holiday or when we have a day out.

Thursday, 2 August 2012

The reason is that earlier this evening I was checking the Mad in America sites to see if there had been any recent comments on my recovery story (there was one and it had been posted more than three weeks ago, to my shame). After replying to it I followed a link on the site (as you do) about an upcoming conference - wish I could go, speakers include David Oaks and Robert Whitaker.

I noticed one of the speakers at this conference is a Dr Joanna Moncrieff, a UK psychiatrist - googled her, and found the above very sensible and unbiased piece, about medication and how psychiatrists should be honest about what they are administering and the effects of it. I am going to look her up further in a mo (and may even write to her, I am not sure to what effect).

GUESS WHAT? Raymond Briggs wrote back to me! (see post entitled 'Raymond Briggs' of a few weeks ago). And he said - I kid you not - that my book is, 'Superb...Absolutely brilliant. Fast-moving and unputdownable'. He wrote me two pages in his wonderful copperplate handwriting - Raymond Briggs took the time to send me a long letter! I love that man.

Anyway. Just couldn't resist putting that in - I got the letter three weeks ago, but held back on sharing it until now, hugging the information all to myself.